Stigma & discrimination

Leprosy and human rights

  • Research priorities: Stigma and discrimination
  • Country: Mozambique, Niger, Nigeria
  • Budget: € 49,990 | Project number: 704.16.43
  • Duration: April 2016 - Augustus 2019
  • Status: Completed

This study seeks to train persons affected by leprosy and their family members in the content of the UN Principles and Guidelines and measure the impact of the training on their dignity, inclusion and empowerment. The study will be performed in Niger, Nigeria and Mozambique. 

Using the UN Principles and Guidelines in Local Participatory Campaigns to increase Dignity, Empowerment, and Inclusion among Individuals Who Have Personally Faced the Challenges of Leprosy: A Comparison of Three African Countries

Project coordination

 Partners

Project summary

In 2010, the United Nations General Assembly approved The UN Principles and Guidelines for the Elimination of Discrimination against Persons Affected by Leprosy and Their Family Members which called for the recognition of the rights, dignity, inclusion, and empowerment of those affected by leprosy and their family members. To date, the UN Principles and Guidelines have not been widely distributed among persons affected by leprosy.

Previous research has shown though that the distribution of UN human rights documents should be tailored to specific social and cultural contexts. The research group expects that when the Principles and Guidelines are presented in a socially and culturally sensitive way they will have a profound impact on people experienced with leprosy and their families.  

This study seeks to train persons affected by leprosy and their family members in the content of the UN Principles and Guidelines and measure the impact of the training on their dignity, inclusion, and empowerment.  This will be done in the three African countries of Niger, Nigeria, and Mozambique. These countries were chosen because of the excellent contacts in each, as well as their diverse range of experiences with leprosy and stigma toward people affected by leprosy. 

The research is informed throughout by participatory methodologies. Two of the Country Project Coordinators have had leprosy and one is the son of parents who had the disease. Additional people affected by leprosy will be involved in the tailoring of the UN Principles and Guidelines into local socio-cultural contexts, in conducting the trainings, in developing our surveys and focus group methods, and in analyzing and disseminating the results of the study. Their involvement in all aspects of the project should have a further positive impact on their dignity, inclusion, and empowerment. 

The findings will be presented in a number of venues including academic articles, professional conferences, a webinar with experts from other countries, and through individual reports for each country. In a second phase of this project it is expected that the trainings will be expanded to other regions in these three countries and to other countries.

Inclusion of people with physical disabilities in Nepal

  • Grant: LRI Regular Grant
  • Research priorities: Stigma and discrimination
  • Country: Nepal
  • Project no.: 704.16.36
  • Budget: € 49,990
  • Duration: January 2016 - December 2017
  • Status: Completed

Full project title:
Breaking down barriers: strategies to include people with physical disabilities, with a specific focus on people with disabilities due to leprosy, in agriculture in Nepal

Project coordination
Enablement Nepal

Partners
Enablement (the Netherlands)
NLR Nepal
Agriculture and Forestry University (AFU) (Nepal)
MetaMeta (the Netherlands)

Aim: This project explored how people with disabilities could benefit from being more involved in agriculture by teaching water management technologies in Nepal. 

Final project summar
Stigma, poverty, public aversion, low self-esteem and lack of awareness remain significant barriers to nclusion of persons with disabilities and those affected by leprosy. The underlying premise of this research initiative, is that if people with disabilities are enabled to access water and improve agricultural water management, it will improve their social status and livelihood opportunities.

If any at all, research and implementation initiatives concerning people with physical disabilities and water access tend to focus on prevention of water-borne diseases and providing access to water for drinking and (adapted) sanitation systems. Although these are important topics, much more needs to be done in the area of enabling people to sustain their livelihoods. While agriculture remains a main employer for a majority of people living in low-income countries, hardly any people with disabilities are (self) employed in agriculture.

This project has been implemented to explore the effect of better access to water for agriculture on the wellbeing and inclusion of people with physical disabilities and their families in particular and for all in general. The project has 2 major focuses; (1) Research to explore as to how can improved access to water for agriculture improve the wellbeing and inclusion of people with physical disabilities and their families, and (2) Pilot initiatives of 3R (Recharge, Retention and Reuse of water) water management technologies installation and functioning with the involvement of persons with disabilities mainly leprosy affected.

The two-year project was implemented in two districts of Nepal, Gorkha and Morang. The project has established 3R in four pilot sites for demonstration and operationalization. The pilot initiatives were also utilized to train, motivate and inform people to manage water, emphasising on cash-generating crops like fruits and vegetables. As part of informing and motivating people, the project has provided orientations on 3R and practical installation procedure for 3R tools to selected farmers and their neighbors (both with and without disabilities). Similarly, the action research kept on exploring and informing as to how the access of persons with disabilities to resources would help them to increase their livelihood means and inclusion in society. The research findings highlighted several opportunities and challenges to include persons with physical disabilities (especially disabilities due to leprosy) in agriculture and livelihoods means in Nepal.

Impact

Hoffmann OM, Yakami S, Dhakal SC (2017). Breaking down Barriers: Gender and Disability in Access to Agricultural Water Management in Nepal. SAWAS journal on Gender, disability and agriculture, Volume 7(1) pp. 16-27

Webinar delivered by Kiran Wagle and Saroj Yakami, hosted by “The Water Channel” on 23rd January 2018. Full webinar can be accessed here.

Presentation at LRI spring meeting 2017.

Inclusive community based rehabilitation in Brazil and Indonesia

  • Grant: LRI Regular Grant
  • Research priorities: Stigma and discrimination
  • Country: Brazil, Indonesia
  • Project no.: 703.15.50
  • Budget: € 100,677
  • Duration: July 2015 - December 2016
  • Status: Completed

Full project title:
Building responses in diverse global enabling settings (BRIDGES): Brazilian and Indonesian community programmes sharing experiences to generate knowledge towards inclusive CBR

Project coordination
Disability Studies Group in the Netherlands

Partners
NHR Brasil
NLR Indonesia
Movement for Reintegration of Persons Affected by Hansen's Disease 
Forum Disabilitas Cirebon FKDC 
Federal University of Ceará 
University of Indonesia 

Aim: This project has assessed feasible and effective ways to achieve sustainability in CBR initiatives of persons affected by leprosy in Indonesia and Brazil. 

Final project summary
Community based rehabilitation (CBR) programmes and projects are now finding more supporters in the field of leprosy. This responds especially to the positive impact that CBR initiatives seem to have regarding disability, although this is still not well documented. Considering that leprosy is no longer seen as solely an infectious disease but as a medical-social problem that causes impairments, the chances that CBR could offer some sort of hope for improving the life of people affected by the disease increases greatly especially in countries with a high incidence of leprosy cases such as Brazil and Indonesia. In view of this, a few leprosy inclusive CBR initiatives were thought to be taking place in Indonesia and Brazil as implemented by small disabled people organisations (DPOs), self help groups (SHG) and self care groups (SCG).

However, sustainability is difficult to reach. Only a few SCG, SHG and DPOs (not necessarily CBR) are proving successful in sustaining their work while others discontinue. Leprosy CBR initiatives are still fragile; inclusive (disability and leprosy) CBR experiences are partly weak and infrequent; thus how those initiatives could be sustainable and become more empowered is one of the main questions that people working in the field of disability and HD in Brazil and Indonesia would like to understand in order to inform future interventions. In view of this, the current project tried to answer the following main research question:

What lessons regarding sustainability can small DPOs, SGH and SCG leprosy and leprosy-inclusive initiatives in Indonesia and Brazil learn from other groups in these countries in order to become more sustainable?

It aimed to:

  1. explore general CBR initiatives existent in the countries selected looking at the specific topic of sustainability
  2. analyse the lessons learned from those initiatives regarding sustainability
  3. propose a kit of tools that can help CBR initiatives (especially small inclusive (leprosy-disability) DPOs or those that are in process of strengthening) to explore, analyse and build on the component of sustainability.

The results show that, on the one hand, some DPOs, SCG and SHG have evolved into spaces that could have essential elements of an informal CBR programme or network; on the other, there is still much to learn from community based approaches in other areas besides disability and leprosy (HIV, diabetes, sexual workers) that are more sustainable. Insufficient spaces exist for sharing knowledge and developing an interactive learning process between all these initiatives within countries and between countries that can strengthen the activities of groups involved in leprosy and disability. The experiences are different as the contexts. Thus, knowledge has been gained first, by looking at what is happening within each country and second, by learning between countries. The learning interaction needed to succeed in such a venture was exercised by people affected by leprosy themselves, at least in Indonesia. Some work is still in progress regarding this aspect in Brazil.

Impact

The teams organised and participated in events within their own countries regarding CBR, human rights, sustainability, tropical diseases and stigma.

Stigma Assessment and Reduction of Impact (SARI) project

  • Research priorities: Stigma and discrimination
  • Country: Indonesia
  • Budget: Total: € 1,069,818 | Project number: 709.00.22
  • Duration: January 2010 - December 2016
  • Status: Completed
  • Co-funding partners: District Health Office, Cirebon (Indonesia) - Disability Forum Cirebon, PPRBM Solo (Indonesia)

The SARI Project studied the effectiveness of community-based stigma reduction interventions in an intervention study design. The intervention strategies tested were counselling, contact and socio-economic development. Final results of this project are available. 

Nr 5 Contact event to reduce community stigma in Indonesia

Project coordination

VU University Amsterdam, Athena Institute (The Netherlands), in close collaboration with Disability Studies Centre, Universitas Indonesia, Jakarta

Partners

  • District Health Office, Cirebon (Indonesia)
  • Disability Forum Cirebon, PPRBM Solo (Indonesia)

Final project summary

Many people are severely affected by health-related stigmatisation and social exclusion. People affected by leprosy, and even their family members, are often denied full social acceptance. In many cases, stigma has a direct impact on their economic situation. Apart from these direct effects on individuals and groups of people, stigma and discrimination form a major barrier for the effective implementation of leprosy and/or disability programmes. Awareness of the importance of health-related stigma is increasing and many projects have gained some experience with stigma reduction activities. However, much of this experience remains local, and the effectiveness and impact of these interventions is not known or measured.

The SARI Project aimed to test and evaluate three different intervention strategies to reduce stigma against persons affected by leprosy in Cirebon, Indonesia.The intervention strategies were: (1) counselling; (2) socio-economic development (SED); and (3) contact intervention.  The project also focused on capacity building of people in Indonesia, particularly people affected and other disabled persons, through training, expert input, conference attendance and employment and PhD opportunities.  

The SARI Project concluded that all three interventions resulted in a measurable reduction in leprosy-related stigma, both at community level and among people affected by leprosy.  More specifically, the contact intervention used a combination of education, testimonies, comics and participatory videos and was highly effective in increasing knowledge about leprosy and reducing leprosy-related public stigma. Moreover, making participatory videos and comics was a highly empowering experience for persons affected by leprosy. Peer counselling and socioeconomic development improved social participation and quality of life among affected people in the intervention areas.Peer counselling was also found to be an effective way of engaging persons affected by leprosy in leprosy services.

The project furthermore led to the cultural validation of stigma scales and produced video guidelines on how to develop context specific stigma reduction interventions and a strengthened local disabled people organization. Three researchers (of whom two from Indonesia) obtained their PhD degree as part of this project.

Selected scientific publications

Ruth M. H. Peters, Wim van Brakel, Mimi Lusli et al.. The cultural validation of two scales to assess social stigma in leprosy. PLoS Negl Trop Dis, 2014; 8(11): e3274. doi:10.1371/journal.pntd.0003274.

Miranda-Galarza, B. et al..The power of personal knowledge: reflecting conscientization in lives of disabled people and people affected by leprosy. Journal of Knowledge Management for development, 2013; Vol 9 (2): 85-104.

Lusli, M., Peters, R.M.H., Zweekhorst,et al. Lay and peer counsellors to reduce leprosy-related stigma – lessons learnt in Cirebon, Indonesia. Leprosy Review, 2015; 86(1): 37-53.

Lusli, M., Peters, R.M.H., Zweekhorst, et al.. Dealing with Stigma: Experiences of Persons Affected by Disabilities and Leprosy. Biomed Research International, 2015: 1-9.

Peters, R.M.H., Lusli, M., Zweekhorst, et al..  Learning from a leprosy project in Cirebon, Indonesia: making mindsets explicit to facilitate the reduction of stigma. Development in Practice, 2015; 25(8):1105 - 1119.

Peters, R.M.H., Dadun, Zweekhorst, M.B.M. et al.. A cluster-randomized controlled intervention study to assess the effect of a contact intervention in reducing leprosy-related stigma in Indonesia. PLoS Neglected Tropical Diseases 9(10):e0004003.

Peters, R.M.H., Zweekhorst, M.B.M., van Brakel et al.. "People like me don’t make things like that”: Participatory video as a method for stigma-reduction in the field of leprosy. Global Public Health, 2016; 11(5-6):666-82.

Dadun, Peters RM, Van Brakel WH, et al..  Cultural validation of a new instrument to measure leprosy-related stigma: the SARI Stigma Scale. Leprosy review, 2017; 88(1):23-42.

 Michgelsen J, Peters RM, Van Brakel WH et al.. The differences in leprosy-related stigma between 30 sub-districts in Cirebon District, Indonesia  Leprosy review, 2018; 89(1):65-76.

Dadun D, Van Brakel WH, Peters RM, Lusli M, Zweekhorst MB, Bunders JG, et al. Impact of socio-economic development, contact and peer counselling on stigma against persons affected by leprosy in Cirebon, Indonesia – a randomised controlled trial. Leprosy review. 2017; 88(1): 2-22.

Co-funding partner

Sasakawa Memorial Health Foundation

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